The Centers for Disease Control and Prevention (CDC)’s Division of HIV/AIDS Prevention (DHAP) in the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention (NCHHSTP) is in charge of the mission of preventing HIV infection and reducing the incidence of HIV-related illness and death.
Q: The Centers for Disease Control and Prevention (CDC) recently started including gender identity, along with sex assigned at birth, in reporting HIV data from the National HIV Surveillance System. Why did CDC choose this time to start reporting the data with gender identity?
CDC recognizes the importance of collecting and disseminating HIV surveillance data for transgender and gender non-conforming populations (TGNC). The publication of gender identity data and sex assigned at birth data in national surveillance products from the CDC National HIV Surveillance System (NHSS) in the Division of HIV/AIDS Prevention (DHAP) at this time is the result of many years of efforts by CDC and state and local health departments to standardize and improve data collection, quality, and reporting. Efforts included revisions in data collection procedures to capture information on gender identity, guidance to health departments on how to collect, interpret, and present the transgender population’s HIV surveillance data, technical assistance and open forums for health departments to discuss best practices for collecting and reporting these data to CDC, as well as ongoing assessments of the quality of the data. CDC will continue working with health departments to assess all data in the NHSS; improvements in collecting and disseminating surveillance data on gender identity remains a priority.
Q: Transgender men and women, especially transgender women of color, are disproportionately affected by HIV. Among the 3 million testing events reported to CDC in 2017, the percentage of transgender people who received a new HIV diagnosis was three times the national average. What accounts for this disproportionate impact?
Published literature has shown that stigma, discrimination, systemic racism, transphobia, homelessness, lack of employment, and incarceration are some reasons that transgender women of color are disproportionately affected by HIV.1-3
DHAP’s portfolio of surveillance activities include the National HIV Surveillance System (NHSS), National HIV Behavioral Surveillance (NHBS), and the Medical Monitoring Project (MMP). Data from these surveillance systems provide a comprehensive picture to describe HIV among transgender people. CDC’s NHSS monitors diagnoses of HIV infection, people with HIV, HIV care-related outcomes by gender category, and deaths after HIV infection; these data are released in HIV surveillance national products in accordance with data re-release agreements with health departments.
The Medical Monitoring Project is a surveillance system designed to learn more about the experiences and needs of people who are living with HIV. MMP collects information on a sample of transgender people and describes behaviors associated with HIV risk and prevention, met and unmet needs for care and services, and clinical outcomes among transgender populations.
National HIV Behavioral Surveillance (NHBS) focuses on three core populations at increased risk for HIV: men who have sex with men (MSM), people who inject drugs (PWID), and heterosexually active people at increased risk for HIV (HET). In an effort to improve its understanding of and to address the lack of information from transgender people, NHBS conducted its first bio-behavioral survey among transgender women (NHBS-Trans) focusing on HIV risk, prevention, testing, and other behaviors from 2019 to 2020. These data will bring to light the effect of HIV on transgender communities and help guide focused and culturally informed HIV prevention strategies.
Q: CDC reports that “few health care providers receive proper training or are knowledgeable about transgender health issues and their unique needs.” How can we raise awareness about transgender health issues among healthcare professionals and ensure transgender people receive proper care?
Collecting gender identity data is essential to providing high-quality, patient-centered care. To raise awareness about transgender health issues among health care professionals, CDC has made information, tips, tools, and web-based continuing education available to health care providers for training staff about transgender health and delivering patient-centered care for transgender people. CDC is committed to working with health care providers to improve the collection of gender identity data and to support the delivery of patient-centered HIV care for all transgender people.
Q: The CDC notes that transgender data “may under report HIV diagnoses among transgender people because of challenges in accurately identifying and reporting gender identity in HIV surveillance.” Can you explain the surveillance challenges in gathering HIV data among the transgender community?
CDC funds and assists state and local health departments to collect data on new and existing cases of HIV infection and report the data to CDC’s NHSS. Health departments have legal and regulatory authority to collect HIV surveillance information and report de-identified data to CDC. An individual’s gender identity in NHSS is determined based on a two-step data collection method of obtaining sex assigned at birth and current gender identity; the sex at birth variable is a system-required data element for cases to be transferred to CDC.
There are several challenges that affect the quality of the data reported. HIV surveillance programs collect secondary data on gender identity, when available, from sources such as case report forms submitted by health care or HIV testing providers and medical records, or by matching with other health department databases (e.g., Ryan White program data). Documentation of gender identity may be missing, inadequate, or conflicting in the data sources as sex at birth and gender identity are not always captured at each facility. The capacity to obtain missing data or to verify conflicting gender identity information varies across health departments. In addition, for some transgender people, willingness to disclose gender identity and expression may fluctuate due to perceived safety issues, leading to a reluctance to identify as a transgender man or woman. Therefore, an individual’s gender identity might not be accurately captured in the NHSS.
Q: There has been limited information on the national impact of HIV on transgender populations in the United States. Timely and adequate data are necessary to inform public health decisions to mitigate HIV-related health disparities among the transgender community. Can you discuss CDC’s plan to improve HIV data collection among transgender men and women? How can people living with HIV make sure their information is accurately reflected in state and national statistics?
It is very important for CDC to collect and accurately disseminate information for TGNC populations. DHAP’s portfolio of surveillance activities (NHSS, NHBS, and MMP) is routinely assessed and improvements in collecting and disseminating surveillance data on transgender populations remains a priority. CDC continues to facilitate peer-to-peer best practice sharing and provide ongoing technical assistance, guidance, and tools to assist health departments to collect quality data for transgender people in NHSS. CDC provides a forum during technical assistance meetings, hosts monthly surveillance-related national calls, and has provided health departments with an analytic program to help identify TGNC individuals. Health departments are requested to follow up and confirm the gender identity of individuals identified from this analytic program. Further, CDC’s DHAP has established an internal workgroup focused on methods for improving the collection and quality of HIV surveillance data among TGNC people. To ensure transgender people are correctly identified, health care providers should routinely discuss gender identity with patients and develop processes to collect this information. Asking for both sex assigned at birth and current gender identity is necessary to increase the likelihood that gender identity is correctly identified. To ensure an accurate reflection of gender identity within state and national statistics, people with HIV would need to disclose their gender identity when receiving medical care or other HIV-related services and providers would need to routinely discuss and collect this information. However, CDC recognizes the challenges in collecting this information and continues to work with providers and communities to identify solutions.
Q: April 18 is National Transgender HIV Testing Day, an opportunity to highlight the disproportionate impact of HIV on transgender populations. What message do you have to the community on this day?
Much remains to be learned about the impact of HIV on transgender populations. Your voices aid our efforts to educate health providers on best practices for working with TGNC patients and helps us foster the development of partnerships with public health organizations that are already working in your communities. With the help of the transgender population, CDC will improve our efforts to better the lives of the transgender people in the community. CDC is committed to enhancing our understanding and addressing the challenges facing TGNC people and encourages TGNC people to continue to help advocate for the collection of quality demographic information so the community is accurately represented. CDC also supports the need for ongoing dialogue about gender-related health with providers to ensure the receipt of optimum HIV care. CDC relies on the voices of the community to share their experiences and help identify ways to improve their lives and health outcomes. Listening to the voices of the community helps CDC identify more ways to respectfully and competently engage TGNC populations in our work.
For resources regarding HIV among transgender people, please see the following resources:
- HIV testing data for transgender people can be accessed in CDC’s National HIV Testing Reports, available at: https://www.cdc.gov/hiv/library/reports/index.html
- For information regarding HIV among transgender people: https://www.cdc.gov/hiv/group/gender/transgender/index.html
- National HIV Surveillance Report provides information on transgender people diagnosed with HIV/AIDS by age, race/ethnicity, and region. https://www.cdc.gov/hiv/library/reports/hiv-surveillance.html
- National HIV Behavioral Surveillance among Transgender Women Report provides information on HIV prevalence, HIV testing, use of prevention services, and HIV associated behaviors among transgender women in 7 U.S. cities. cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-special-report-number-27.pdf
- For information regarding a comprehensive list of ongoing activities click here and scroll to “What CDC is Doing”.
- For information regarding CDC’s high-impact prevention approach to maximize the effectiveness of current HIV prevention click here.
- Becasen JS, Denard CL, Mullins MM, Higa DH, Sipe TA. (2019).Estimating the Prevalence of HIV and Sexual Behaviors Among the US Transgender Population: A Systematic Review and Meta-Analysis, 2006-2017. American Journal of Public Health. 109(1): e1-e8.
- Magno L, Silva LAVD, Veras MA, Pereira-Santos M, Dourado I.Magno L. (2019). Stigma and discrimination related to gender identity and vulnerability to HIV/AIDS among transgender women: a systematic review. Cadernose de Saude Publica 35(4).
- Poteat T, Wirtz AL, Reisner S. (2019). Strategies for engaging transgender populations in HIV prevention and care. Current Opinion in HIV and AIDS 14(5):393-400.
Disclaimer: The findings and conclusions in this manuscript are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.